Vanderslott, SJ; (2017) Neglect in policy problems: the case of 'neglected tropical diseases'. Doctoral thesis , UCL (University College London).

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Abstract

This thesis is concerned with how previously neglected issues, in this instance tropical diseases, gain prominence on policy agendas, and shows how advocacy and measurement are used to bring issues to the attention of policymakers. The term 'neglected tropical diseases' (NTDs) was coined in the early 2000s to describe lesser-known diseases that existed in the shadow of the high-profile and well-funded “big three” – HIV/AIDS, tuberculosis (TB), and malaria. The case of NTDs demonstrates how a policy problem can be understood amidst connections being drawn or not drawn between issues, and the forms of intervention taken to address neglect in policy. Thus, the central question of this thesis is: How did a re-labeled disease category within a decade result in billions of funding being directed towards a previously 'neglected' issue, with global commitments for control, elimination, and eradication? The analysis is presented in two parts and shows how NTDs have gained acknowledgement and care through the concept of neglect. The first part involves the conceptualization of common characteristics and methods of standardizing a disease grouping, which is far from a straightforward process as various lists of NTDs attest. The second part, through a sociohistorical analysis of the origins and policy development of NTDs, demonstrates how policy appeal is created through the use of both advocacy and measurement, more usually treated as distinct areas within global health policy. It draws on interviews with 55 actors from scientists, to policy officials, NGO workers, and academics, and also undertakes a documentary analysis, which includes historical sources. Using theoretical perspectives from Science and Technology Studies, Public Policy, and Political Economy, this thesis demonstrates what the concept of neglect brings to understanding policy problems. It concludes that both the perception and responses to neglect in policy can be understood in four distinct and overlapping ways, through: information, action, feeling and thought.

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